I am after advice from anyone that may have been in a similar situation to me.
I was diagnosed with CC stage 1b2 in December, had a radical hysterectomy with lymph node clearance in January (they left my ovaries behind to prevent early menopause).
Histology results showed no lymph node involvement and clear margins so it further treatment needed. I was over the moon!
But now they have changed their minds on treatment and have offered me 5 weeks of radiotherapy as a “belt and braces” due to LVSI, depth of invasion and the SCC being a grade 3. The oncologist cannot advise me either way whether to have the radiotherapy- he said I am a room splitter where the MDT discussed my case and went around in circles whether to offer me the radiotherapy or not. I have read lots of research about LVSI and none of it is conclusive although radiotherapy does reduces the risk of recurrence, but then I am terrified also of the possible side effects of radiotherapy!
It is my decision but I am really struggling with it and any help or advice would be much appreciated!
I am 40 with a lovely husband and 2 children aged 7 and 10 xxx
I had radiotherapy last year, don’t worry about the side effects, what actually matters long term is getting rid of the cancer and it really does work - my back story - I was grade 3b, had 5 weeks of radiotherapy and 5 lots of chemo and then 2 lots of internal radiotherapy. 3 months later I was in remission.
My side effects were - constipation to diarrhoea, a weaker bladder, feeling sick during treatment, and some pain.
The process might seem scary but trust when I say when the first one is done, you will get up off the table and say, oh, what that it? The actual process is incredibly simple to go through and takes literally minutes.
Thanks for replying. It is good to hear your treatment went well and you are in remission.
I think I’m just finding it difficult to decide- I was all for it until the oncologist put it to me to decide as I’m kind of on the cusp of whether I need it or not- I’m worried I’ll have the radiotherapy when maybe I don’t need it and end up with long term side effects. Lymphoedema is higher risk due to having lymph nodes removed during surgery and then radiotherapy on top.
I wish you all the best, Lou xx
But I also feel I should be taking everything to reduce the risk of reoccurrence
I sent you a private message.
It’s strange how there is such variation in treatments. And it just makes decisions more difficult! They likened it to a belt and braces approach in case there were any microscopic cells remaining due to the LVSI and depth of invasion into the cervix.
I’m probably going to have the radiotherapy as I don’t think I could forgive myself if it reoccurred, but I’m literally terrified of long lasting effects to bladder or bowel or lymphoedema.
Chemotherapy must be gruelling, I hope it does the trick for you though- was your chemo for a similar reason to mine?
Sending lots of love and strength
It absolutely makes the decisions difficult doesnt it. I know i should trust that the treatment they recommend is the best and i dont mean to question them but it is so hard to put your life in their hands sometimes isnt it, especially with something like this. Like you i googled the hell out of lvsi and there was nothing conclusive or necessarily positive about it. Thats what they said to me re the microscopic cells and belts and braces. The chemo was recommended mainly because i also had the neuroendrocine component and its that they are more worried about than the usual cervical cancer. The issue of lvsi wasnt really mentioned again (which is why i think im questioning why RT hasnt been recommended) They said to me that i dont need to have the chemo i could just walk away but the recurrence risk is too high a risk to take. Thats how i felt when i made the decision re forgiving myself. I suppose the positive way to look at it (and im such a pessimist usually) is that its just an extra insurance policy that isnt necessarily offered to everyone with our stage, i suppose id rather be on this belts and braces side of the fence than the other. Im glad youre swaying towards having the RT, i think its a sensible decision, hopefully the side effects wont be too bad for you, let us know how you get on. Sending love and hugs xx
Hi @Loulou82 - sorry you’ve found yourself in this position. I also was 1b2 and had a radical hysterectomy (December '22). Due to LVSI, I was recommended to do low-dose radiation and chemo (to sensitize and help the radiation work better). I was also told that I’m on the cusp of needing it (since technically everything was removed with the RH). It’s not been easy, but I only have one more chemo to go and two weeks of radiation. The side effects haven’t been great, but they’ve been manageable. I’m not even sure I’ve had any side effects from the radiation. I too was struggling with moving forward, but I thought I would be so upset at myself and constantly worry about the “what ifs.” Sending you lots of love and clarity.
I am relieved to find someone in the same situation as me- although it’s not a good position, could be better, could be worse! I am sorry that you have side effects but totally get your decision- I am definitely leaning towards having the radiotherapy as I think I would regret not having it if the cancer came back- at least I know I did everything I could to reduce the risk of reoccurrence, the same as you have said.
I haven’t been offered chemo, just radiotherapy- it’s crazy how treatment seems to differ so much. Im in the UK south west.
Sending you so much love and strength. The best of luck on your journey
I had the same diagnosis in August and the same surgery in September. I decided to have all the treatment offered, chemo, radio and brachy - I was given the all clear on Friday with a clear MRI.
I also have children 8-19 yrs and we managed to keep life pretty normal, I even kept ticking along at work.
The side effects are different for everyone but my advice would be to not be scared of it - it wasn’t as bad as I thought it could have been and apart from
Tiredness I have no lasting effects.
It is good to hear that you have had no lasting side effects. I am feeling now that I should take whatever treatment is on offer to reduce the risk of recurrence.
I wish you well on your journey
Thank you SamG for this insight, might i ask if the side effects are long term? I am soon to start radiotherapy.
Very best to you in all ahead. I am in a somewhat similar situtation, though as we see every case is treated differently.
I had a radical hysterectomy in January 2022 incl removal of lymph nodes and ovaries (I am in my late 50s) . I have recently had a local reoccurence which was tiny but spotted by my oncologist. I am due to start radiotherapy tomorrow, 5 weeks external, to be followed by internal. I am advised chemo is not necessary for me.
Sometimes I wish i had asked for a second opinion, and at others it seems the medical team are keeping a close eye and doing the best they can for me, and it is best to keep going as advised.
Thank you for posting your question and experience, it is helpful to share and learn from each other.
Lots of good wishes to you.
It seems no two cases are the same and treatment varies throughout regions/hospitals.
I hope your radiotherapy goes well with minimal side effects and wish you all the best for the future
Hi Lou, sorry to hear you’re in this position. Only you can make the decision but if it was me I think I’d want to really throw everything I’ve got at it to give me the best chance of it not coming back. Saying that, radiotherapy comes with potential long term side effects which I’m sure you already know. Wishing you all the best! X
I have a similar decision to make and I am also finding it difficult. I had early cervical cancer 1a1 last year and had biopsy/Lletz and hysterectomy preserving ovaries and then on my six month follow up the vault smear came back abnormal. There is nothing to see on any repeat scans (MRI and PET Scan), and only cancer found was a tiny focus of invasive cancer on a random biopsy of the upper vaginal wall. I started chemotherapy and radiotherapy today and the actual treatment was fine just a bit tired at the moment, hoping it will stay that way! The side effects are what worry me most and I feel as though I just don’t truly understand how I am going to feel. They are offering me brachytherapy too at the end. My situation is unusual in that the cancer is so early and may have been removed by the biopsy but they aren’t able to say 100% that there isn’t any more cancer as nothing to target just a whole area of high grade pre cancer with no growth visible. They are worried that they are over treating but at the same time worried that under-treating could have serious implications hence why going with belt and braces. I think I know I have to accept everything but am worried about the side effects and would love to know more from ladies who have had treatment in particular about how they felt during the treatment and also the vaginal stenosis after. I wish you well and hope that you are able to come to some decision you are comfortable with now, I think it’s difficult and I am trying not to think about the long term side effects but focus on cure. So to go for it and deal with anything that comes up later x
Hey LP, happy to answer any questions about the treatment. I found the treatment itself difficult but absolutely doable. I was severely nauseous and nothing helped. Other ladies I know coped with it much better. The part I was dreading the most - the brachytherapy - was actually fine. I seriously lost sleep over it in the run up to the procedure. It wasn’t pleasant but no where near as bad as I was expecting. I have no issues with vaginal stenosis but I used my dilators (although not as often as I should have). Hope the rest of your treatment goes well x
Thank you for your reply. Yes I am dreading the brachytherapy but am also told that it isn’t as bad as I am thinking. I had a traumatic birth and think I probably have some post traumatic stress from this which isn’t helping! Everyone has been so kind though which really helps and I have found that explaining how I am feeling at the start of each appointment has really helped, they have been very patient. It’s good to hear stories of those ladies who have gotten through the treatment I know it is going to be hard work but am counting down the days! Is there anything you can do during the radiotherapy to help prevent the stenosis? For example using moisturisers etc? I know dilation starts after finishing but I wanted to see if there is anything I can be doing now to help? X
This is such a difficult decision and there is no right or wrong answer. It’s a really horrible situation.
I was diagnosed with CC 1b1 adenocarcinoma in 2013 , I had a radical hysterectomy with ovaries left behind , at the time I to was given the decision to have radiotherapy and chemotherapy as “ belt and braces “ , following the hysterectomy and I was going to go for it, however at a follow up appointment my consultant said after further evaluation with his colleagues I actually “ didn’t meet the criteria “ so I never had the chemo / radio.
In 2015 I had a recurrence to the ovary , now this is apparently very rare to happen , but it obviously can , I then went on to have chemo radiation.
I went 7 years NED and recently diagnosed further recurrence to my lung.
If you are struggling with the decision , I would advise on seeking a 2nd opinion, I found doing this very useful.
I just wanted to share my story , you have to do what’s right for you , good luck .
I am so sorry to hear your story. It seems awful that they offered you extra treatment then changes their minds and that you’ve had further recurrence. I wish you all the best
I have decided to go for the radiotherapy - I had a letter from my surgeon which outlined the risk factors and seeing it in black and white helped me make my decision, although I have deliberated all week. I spoke to my oncologist this morning and he was very lovely and supportive of my decision and in fact made me feel that I have made the right decision.
Sending love and strength to all you amazing ladies